Download a PDF version of the poster here.
Looking for HHE resources? Check this out…
What might ‘dying in honour’ mean in Guinea during an EVD outbreak?
Follow the link to a blog post by Sekou Kouyate, Research Assistant on the projects “Aid When There is ‘Nothing Left to Offer‘” and “Perceptions of Research During the 2014-15 Ebola Virus Disease (EVD) Outbreak“, about the meaning of ‘to die in honour’ during the EVD public health emergency in Guinea.
http://www.elrha.org/r2hc-blog/ideas-on-dying-in-honor-in-guinea/
Here is the blog post in French / voici la poster en français:
IDEES DE MOURIR DANS L’HONNEUR EN GUINEE
L’étude «L’aide quand il n’ya plus rien à offrir» comprenait une étude de cas sur les soins palliatifs dans les centres de traitement Ebola en Guinée lors de l’épidémie de 2014-2016. Son objectif était de capturer les points de vue des professionels de santé, des décideurs publics et des membres de la communauté afin de mieux soutenir les soins de fin de vie. Des entretiens semi-structurés ont permis d’explorer les besoins, les attentes, les perceptions et les défis associés aux soins de fin de vie dans le pays pendant la crise Ebola dans le pays ETC.
En tant que coordinateur de la recherche guinéenne pour le groupe de recherche sur l’éthique en santé humanitaire, j’ai mené des entretiens avec des participants de mon pays sur leurs expériences en matière de soins de fin de vie et de soins palliatifs au cours de l’épidémie. Malgré l’intensité de la situation, l’idée de mourir honorablement a été maintes fois soulignée comme importante.
Ce blog décrit les perceptions des Guinéens de ce qu’ils appellent «mourir en honneur», ou de ce que nous comprenons maintenant comme des soins prodigués aux patients mourants, ainsi que des symboles, actes et rites consacrés à cet événement.
Contexte:
La République de Guinée est un pays laïc. Bien que cette laïcité soit garantie par la Constitution, elle s’inspire de la pluralité et du respect des croyances traditionnelles.
La diversité des croyances et le fait que seulement 19,1% de la population a atteint le secondaire ou le secondaire ou que seulement 1,2% d’entre eux savent lire une phrase complète, ont une incidence sur la perception qu’ont les Guinéens de la maladie, des types et des lieux de soins, de la personnalité des soignants et des lieux et les circonstances de la mort.
L’histoire, les conditions économiques et les épidémies passées guinéennes influencent d’une manière ou d’une autre la perception de l’idée de mourir dans l’honneur. La représentation et les symboles de «l’honneur» sont également perçus différemment en raison des conditions économiques préexistantes personnelles, valeur accordée aux cérémonies funéraires ou importance accordée aux visites des membres de la famille proche.
Malgré la diversité des perceptions, comparé aux soins médicaux des patients, le soutien psycho-social fourni par les membres de la famille au patient mourant est considéré comme l’élément le plus «honorable» de la mort et est considéré comme plus important que toute capacité financière d’acheter des médicaments.
Perceptions des participants à l’étude explorant les soins palliatifs dans les centres de traitement de base guinéens
Débordant de patients dans les ETC, peu de temps a été consacré aux soins des patients, dont beaucoup mouraient. Normalement, on ne passait pas plus de 45 minutes à la fois dans l’unite de patient. De plus, de nombreux membres du personnel recrutés sur le plan national ne se sentaient pas à l’aise avec l’administration de morphine pour soulager la douleur. Il y avait aussi beaucoup de méfiance vis-à-vis des soins fournis dans les ETC à cause de diverses rumeurs. Dans ce contexte, le respect du concept de «mourir dans l’honneur» a nécessairement pris de nouvelles formes. Cependant, on a toujours considéré que le soutien personnel, généralement de la part des membres de la famille, était d’une importance capitale.
Ces déclarations d’anciens patients atteints d’ETC fournissent une preuve remarquable de l’importance de la signification de la famille dans l’idée de mourir en honneur pour les Guinéens. Selon les participants:
Participant2 :-Moi je pense qu’on doit être entouré par des personnes qu’on aime qui soutiennent moralement et que tu te sentes aimé avant que Dieu ne te retire ce qu’il t’a confié.
Particpant2 : – la famille fait partie de ces personnes les médecins traitants ; la famille pourquoi, c’est pour ne pas que tu te sentes abandonné. Le medecin pourquoi ? Par ce que , un patient même si un patient doit mourir, il se dit que son medecin est son remède.
Participant 8 : -c’est de faire des bénédictions au mourant. C’est ce qu’il a besoin pour que son âme lui enlevé dans la douceur.
Participant14 : -Ceux qui viendront vont s’occuper de toi. Ils vont rendre propre et vont faire les ablutions avant de toucher à un cadavre – tu vas mourir avec presque tous les membres de la famille, c’est-à-dire tu es assisté moralement sur tous les plans. Donc sur le plan social, tout est là.
Respirant le dernier souffle sous le soutien moral des membres de la famille et / ou du personnel de santé, les bénédictions ainsi que les conversations données par les parents avant et après la mort sont des éléments essentiels de la mort en honneur en Guinée.
En fin de compte, malgré la diversité des points de vue et des opinions parmi les Guinéens, la grande majorité des Guinéens observent des normes sociales. Les patients à l’hôpital peuvent être visités moins souvent, mais à partir du moment de la mort, les cérémonies funéraires sont organisées par un grand nombre de membres de la famille du monde entier: des bœufs sont tués, des sacs de riz arrivent pour un festin. Il a peut-être fallu un quart de ces investissements pour acheter une ordonnance au patient, cette dépense économique symbolize que la mort n’est pas facilement acceptée, des questions sont posées sur la raison ou la raison en signe de respect et de dévotion. L’appui moral par le biais de l’interaction familiale avant la mort d’une personne et de ses (re) liens familiaux après la mort contribue à soutenir l’idée de «mourir d’honneur» en Guinée.
Photo credit: https://www.pexels.com/photo/hands-people-friends-communication-45842/
Holiday greeting from HHE!
Have Content to Share on Post-Research Ethics Analysis? Here’s a CfP for you!
PREA: Call for Abstracts
Abstracts are now being accepted for paper and poster presentations at an International Conference on Ethics & Humanitarian Research.
The conference is organised jointly by the PREA Research Team and The Ohio State University (OSU).
The conference takes place 25-26 March 2019 at OSU in Columbus, Ohio, USA.
Confirmed Speakers
Others will be added as confirmations are received.
- Tine Van Bortel, Ph.D.,
Professor of Global & Mental Health, University of East London, UK;
Deputy Director of the Institute of Health & Human Development. - Matthew Hunt, Ph.D.,
Associate Professor and Director of Research, McGill University, Montréal, QC, Canada
Co-Director of the Humanitarian Health Ethics Network - Elysée Nouvet, Ph.D.,
Assistant Professor, The Africa Institute, Western University, Ontario, Canada;
conducted research in West Africa on the 2014-2016 Ebola outbreak
More about the conference:
The Post-Research Ethics Analysis (PREA) project is funded by r2hc to address ethical issues in humanitarian research.
One output is a practical tool to facilitate reflection on and learning from ethical issues arising during humanitarian research. The tool will be launched at the conference, along with keynote lectures, accepted paper and poster presentations, and structured conversations between humanitarian researchers and ethicists.
Abstracts deadline: 31 December 2018.
- For guidelines and to submit an abstract, go to: http://www.preaportal.org/conference/submissions/.
- Travel expenses will be covered for a limited number of accepted presentations.
- Conference proceedings will be available in an open-access, searchable platform, OSU’s Engaged Scholars.
- Information on the International Conference: http://www.preaportal.org/conference/
- Information on the PREA project: http://www.preaportal.org/
- Information on The Ohio State University: https://www.osu.edu/
The PREA project also has an open call for submissions of Case Studies in the Ethics of Humanitarian Research: http://www.preaportal.org/case-studies/
If you have specific questions about the Conference, please email info@preaportal.org.
__________________________________________________
Upcoming abstract deadlines.
Don’t miss you chance to submit abstracts for the following events:
- November 12: WADEM Congress on Disaster and Emergency Medicine, Brisbane, Australia, 7-10 May 2019
- November 23: Canadian Bioethics Congress (CBS), Banff, Alberta, Canada, 22-24 May 2019.
- Theme: Embracing the Disruptive Edge of Health Care
- Website: https://cbsscb.meetinghand.com/en
Missed our event in Geneva? Looking for a summary? Here it is.
Have a look at a summary of the events that took place 26-27 September when the HHE Research Group visited Geneva.
Thank you to our co-hosts CERAH, and to all of our participants over the two days and one evening of exciting activities.
By all means, if you have thoughts you’d like to share with us about our ongoing research or the events from September in Geneva, please contact us!
HHE research group in the news.
Follow the link to reach an article published in the CHEPA newsletter reporting about the Humanitarian Health Ethics research group’s events in Geneva, that took place in September 2018.
HHE Representation at HSR2018, Liverpool
From 8-12 October the Fifth Global Symposium on Health Systems Research was held in Liverpool, UK.
The HHE research group was well represented with a presentation on the Perceptions of Ebola Virus Disease Research project by Ani Chénier entitled “Beyond Triumphalist Discourses” and a poster on the Palliative Care in Humanitarian Crisis settings.
From the study on perceptions of EVD research:
The full citation of the presentation is:
Elysée Nouvet, Ani Chénier, Oumou Bah-Sow, John Pringle, Sékou Kouyaté, Sonya de Laat, Matthew Hunt, Carrie Bernard, Lynda Redwood-Campbell, Laurie Elit, Lisa Schwartz, Beyond triumphalist discourses: West African voices on the need to recognize and sustain national research capacity in the wake of the 2014-6 Ebola epidemic. Fifth Global Symposium on Health Systems Research, 8 –12 October 2018,Liverpool, UK.
ABSTRACT:
BACKGROUND The 2014-6 West African Ebola epidemic, in which a neglected disease for which no effective treatment or vaccine was yet known claimed over 11,000 lives, was a stark reminder of the essential role that health research plays within health systems.
In 2016, we launched the “Perceptions and moral experiences of research conducted during the West Africa Ebola outbreak” study. This qualitative study seeks to better understand socially-situated practices and moral experiences of research conducted in public health crisis situations, and to deepen understanding of challenges to and strategies for the ethical conduct of research during public health emergencies. It explored, among other issues, the practical and ethical complexities of international research collaborations established during the outbreak.
METHODS We conducted in-depth semi-structured interviews with 108 stakeholders directly involved in research at trial sites in Guinea, Sierra Leone, and Liberia. Participants included: 1- people having participated in clinical and persistence studies; 2- people engaged in the conduct of research (as investigators or research staff), 3- local and international research ethics board members; 4- governmental and civil society leaders. Most (91%) were from West African countries.
RESULTS Participants identified many strengths of research conducted during the outbreak, notably: 1) the success of some international partnerships (especially vaccine trials), 2) the development of innovative and adapted strategies for communicating with participants, 3) opportunities for capacity building, especially for first-time researchers, and 4) rigorous and constructive oversight by national research ethic boards.
Key challenges or failures included: 1) limited opportunities for higher-level engagement of affected-country researchers within international partnerships, 2) limited engagement of mid- or late-career researchers in the development or leadership of studies, 3) unequal access to and control over research materials like bio-samples, and 4) failures to sustainably invest in national research institutions.
CONCLUSIONS Our findings highlight the important role played by health research within local and national health systems, and complicate triumphalist discourses about the role of ‘capacity building’ in international research. During the 2014-6 West African Ebola outbreak, efforts towards capacity building were appreciated by many. Yet many also expressed frustration with the lack of investment in national research infrastructure and institutions, and the lack of opportunities for mid- and late-career researchers from affected countries. This had important practical implications, notably for the setting of research priorities that reflect needs and possibilities at the national level. Capacity must not only be built: it must also be recognized, supported, and sustained.
From the study on palliative care in humanitarian crises:
Full reference for the poster:
de Laat, S., Matthew Hunt, Elysée Nouvet, Olive Wahoush, Kevin Bezanson, Carrie Bernard, Lynda Redwood-Campbell, Laurie Elit, Wejdan Khater, Oumou Bah Sow, Emmanuel Musoni, Rachel Yantzi, Ani Chénier , Lisa Schwartz, Dying in the Margins: Palliative Care, Humanitarian Crises and the Intersection of Global and Local Health Systems, Fifth Global Symposium on Health Systems Research, 8 –12 October 2018, Liverpool, UK, Abstract ID: 3989
The poster is available below (& here as a PDF):
Abstract:
OBJECTIVES There is no doubt that the primary goal of humanitarian healthcare has to be to save lives. Given the extremity of the crises in which humanitarians respond, not all lives can be saved. There is a growing acknowledgment of the role of palliative care in humanitarian healthcare. Here we present an interpretive description of the experience of palliative care in a variety of humanitarian crisis settings. Our objective is to map the diversity of those experiences and to examine the innovations and inconsistencies of global and local health systems to assess the obstacles and opportunities of these health systems in the support of palliative care during international humanitarian crises.
METHODS Four case studies were identified through stakeholder meetings and key informant interviews that represent a broad range of humanitarian emergency situations where palliative care needs arise:
- A public health emergency: Guinea during the Ebola Crisis;
- An acute conflict & refugee situation: Syrian refugees in Jordan;
- A protracted refugee situation: Congolese and Burundian refugees in Rwanda; and,
- Natural disaster situations: various geographic settings.
For each case study, in-depth, semi-structured interviews exploring experiences, needs, frustrations, and possibilities for palliative care were conducted with patients or family members of individuals with a terminal or life-threatening condition suited to palliative care. Along with interviews with crisis-affected people, local and international humanitarian healthcare providers were interviewed at each site.
RESULTS Global and local health systems—independently and intersecting with each other—emerged as a recurrent source of barriers to the provision of palliative care. Dominant themes include: global restrictions and local cultural anxieties to accessing essential medications for symptom relief; importance of culturally relevant, and locally informed, care and psychosocial support; the lack of international and local palliative care guidelines, training, and support for the provision of palliative care during international humanitarian crisis events. Changes to global health systems and improved interaction between local and international actors were cited as enablers to comprehensive palliative care provision. Palliative care was recognized as an essential component of holistic, comprehensive humanitarian healthcare, and should never act as a substitute to health system improvements for curative care.
DISCUSSION The alleviation of suffering is central to the work of humanitarian healthcare, and yet competing priorities often result in a lack of attention to palliative care. Our study presents critical insight onto the role of local and global health systems in the provision of palliative care in contexts of humanitarian crises.
A Canadian Medical Family’s Humanitarian Legacy
By Gautham Krishnaraj, for the Canadian Red Cross Blog
“Over 150 years ago, the Red Cross Red Crescent Movement was born in the wake of the Battle of Solferino in 1859. Movement founder Henry Dunant was so moved by the immense suffering he saw that he called upon local villagers to come to the aid of the wounded. Among those who responded to the call were the Women of Castiglione, countless European medical professionals and Norman Bethune – a Canadian surgeon from Ontario. Dunant himself spoke of Bethune in A Memory of Solferino, recognizing him by name as “Norman Bettun”.
Nearly a century later, Bethune’s grandson – also named Norman – would follow in his grandfather’s footsteps, playing a critical role in the 1938 Sino (Chinese)-Japanese War. The younger Bethune was an established surgeon, having invented more than a dozen surgical devices, including the Bethune Rib Shears which are used to this day. During the 1936 Spanish Civil War, Bethune organized one of the first mobile blood transfusion services. He later travelled to China with the International Committee of the Red Cross (ICRC) to lead a Canadian-American medical team during the Sino-Japanese War. He wore his Red Cross badge with pride, performing surgeries on the frontline to casualties on both sides of the conflict, as countless Red Cross surgeons continue to do to this day.”
Read more about the Bethune family and their contributions to humanitarian health care through the decades here: http://www.redcross.ca/blog/2018/8/a-family-on-the-frontlines—celebrating-norman-bethune
Reposted from original blog with permission of the author.
McMaster Global Health Speaker Series to Feature HHE’s Dr. Lisa Schwartz
Thursday, December 6, 2018
Dr. Lisa Schwartz
Arnold L. Johnson Chair, Health Care Ethics; Professor, Health Research Methods, Evidence and Impact, McMaster University
“Ethics, Obstacles and Palliative Care in Humanitarian Settings”
MDCL 3020 – 4:30-6:30PM
Other speakers and dates:
Monday October 22, 2018
Dr. Govindakarnavar Arunkumar
Dr. Govindakarnavar Arunkumar
Professor & Head, Nodal Officer (Influenza Lab), Manipal Centre for Virus Research, Manipal Academy of Higher Education
“Nipah Virus: An Emerging Pandemic”
MDCL 3020 – 4:30-6:30PM
Thursday November 22, 2018
Dr. Stuart MacLeod
Professor Emeritus, Pediatrics, University of British Columbia
“New Approaches to Improving Therapeutic Choices for Children: A Global Health Priority”
MDCL 3020 – 4:30-6:30PM
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